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Thread: Welcome to the Transverse Myelitis and Atraumatic SCI forum

  1. #31
    Senior Member
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    Lynn, it is spam the best - bomb 'em lazy flyers and remove this last posters of this thread.

  2. #32
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    Hi Lynn...
    I was diagnosed with TM July 07... was in rehab in Windsor for 4 months..currently I have been getting PT in a Chatham hospital... Windsor to far to drive.. i live in Tilbury.. i was wondering about effects of PT.. I am having a lot of pain the last few months and seems to be worse after PT...

    Bartles99

  3. #33
    Hi i was diagnosed with myocitis by 2 doctors here in the U.S,(UCLA) and i went to Mexico to see a well known doctor that has helped a lot of people, he said i was misdiagnosed in the US he actually said i had muscle dystrophocy, he was the one that recommended the sheep cell therapy,
    i just wanted some feedback with anyone that has the same condition, or similar that have taken that therapy.

  4. #34
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by cpcoats
    Hi i was diagnosed with myocitis by 2 doctors here in the U.S,(UCLA) and i went to Mexico to see a well known doctor that has helped a lot of people, he said i was misdiagnosed in the US he actually said i had muscle dystrophocy, he was the one that recommended the sheep cell therapy,
    i just wanted some feedback with anyone that has the same condition, or similar that have taken that therapy.
    http://www.myositis.org/template/news.cfm?news_id=71

    The above site covers the myocitis's but I can find no information on "muscle dystrophocy". Sheep cell therapy? In case this is for real, your post I mean, I'd join the above organization. I know of NO therapy for humans involving sheep cells unless GM-1 from sheep has been approved for human use. I seriously doubt this has happened yet. And ask where they got the sheep? Mexico is not known for its wool or lamb chops...

    And did this last "doctor" mean you have muscular dystrophy? If so you might try the Muscular Dystrophy Association for information.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #35
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by bartles99
    Hi Lynn...
    I was diagnosed with TM July 07... was in rehab in Windsor for 4 months..currently I have been getting PT in a Chatham hospital... Windsor to far to drive.. i live in Tilbury.. i was wondering about effects of PT.. I am having a lot of pain the last few months and seems to be worse after PT...

    Bartles99
    Bartles99, I'm a member of the TMA although my injury was from a spinal stroke. I've been to several of their symposiums and from what I gather those who regain the most seem to have the most pain. Those who are complete injuries tend to have little or no neuropathic pain. I'd suggest talking to your neurologist or therapist about pain control. Remember also that in healthy atheletes that muscle is created in small tears to existing muscle. We just feel those little tears a whole lot more than able bodied people. Does Chatham offer water therapy? If so that may be a good break and so great feeling to muscles and skin.

    Sue
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  6. #36

    Newbie

    Hello, I'm new to this forum but have been diagnosed with Transverse Myelitis since the middle of May 2008. I had a total thyroidectomy (entire thyroid removed) on August 13th because I had a fine needle biopsy that indicated a cancer pattern in the thyroid which turned out cancer free. My neurologist has been searching for a primary cause to explain the lesion in my spinal cord at the T1 level. I have had a cervical MRI that shows this to be about the size of a man's pinkie finger, and I have had the numbness of the lower extremities, the banding (early on), the bladder and bowel problems, the spasticity in my legs (early on), all the symptoms of MS which I was tested for and found negative, and TM. I was on the IV steroid Methylprednisolone May 17-21 for the inflammation in my spinal cord. I've been taking 60 mg Prednisone since August 25th to control the spasticity and for mobility. I'm also taking 75 mg Lyrica daily for the neuropathy in my left leg which developed late July.

    I'm 54 years old, female, and my symptoms are not getting any better. My neurologist was sure that there was a primary cancer source and that the lesion in my spinal cord is the secondary. I guess I'm curious to know what is next when I go to see the neurosurgeon my neurologist has set me up with. I guess we now have to consider surgery or a biopsy - how dangerous are these? My neuro didn't want to recommend either - he mentioned external beam radiation to shrink it and possibly chemo. I will be going to see my hematologist-oncologist tomorrow to see what his opinion is.

    If you need more information on my background, please let me know. It's kind of sketchy here, and I seem to be having trouble with my short-term memory since I've been on these meds. I also wanted to know how long a person can safely take Prednisone? This stuff has made me gain weight and swell like crazy!! Thanks for your time.

    Terri

  7. #37
    hi dr. wise.

    Hello, I'm new to this forum but have been diagnosed with Transverse Myelitis since the starting of November 2007. I went to my office and work hole day and come back home. In mid night I vomit several times
    (4-5) and not able to pass my urine. However I pass the hole night in pain at my lower abdomen. In the morning I pass my urine from using a catheter at nursing home. Suddenly I am losing my legs power and was tried to stand up but not able to stand up and fell down. I was trying but not able. I reach a hospital and gone through a MRI test and diagnose TM. Now, after 1 year i improving from TM but my urine problem is not improving. I checked my urine for culture and diagnose Pseudomonas. I dont know what should I do.

  8. #38
    Super Moderator Sue Pendleton's Avatar
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    Naresh, you need to see a urologist to be given antibiotics if you have an infection of the bladder or kidneys. What level was your TM diagnosed at? Cervical, thorasic, lumbral or sacral? How the bladder works after TM depends on where the original lesion/s were.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #39
    Hello Everyone, I'm new to this group. Myself Prasad aged 27 (Male, unmarried, India) had diagnosed for TM on last year (May-07). Initially i had headache followed by fever. It took a week time to loose my control over legs, bladder & completely collapsed on 8th day. I was unable to stand on my leg, urine & stool got blocked, not able to sit, lost sensation at below chest with lots of pain & had blurred vision. After diagnosis, I had Acute Transverse Myelitis. I have been on Steroid for couple of days & slowly started to gain sensation & able get some movements in leg. I have on indwelled catheter for 2 months. After that, Dr removed the indwelled catheter & tought me to do CIC (clean intermittent catheter), enema & was on physiotherapy. After 5 months i have joined back to work. Now after more than one year I can able to walk properly, able to do jogging (but cant run fast), have complete sensation. As of now I had good recovery, but still I have following problems.
    1. Urge to pass urine,
    2. Difficult to pass stool,
    3. ED
    Right now i'm not on CIC & able to void urine naturally. Max urine i can hold is 279 ml with residue of 68 ml (from sonography). I have been on Tolterodin Tetrate & Imipramine for bladder control. But if i have been on medicine, I need to do CIC as i cant pass urine naturally. If not, i will have urgency which sometime results in leak. Right now I'm not taking any of medicines.

    I had gone penile doppler which reveals that i don't have ED, but still i can't able to have complete erection. As still i'm single I don't have any problem, but need to overcome this too. Do we have any exercise or medicines to overcome this?

    Need your valuable suggestions
    In advance, Thank You for your valuable time & suggestion
    Prasad.

  10. #40
    Quote Originally Posted by TMSuffered View Post
    Hello Everyone, I'm new to this group. Myself Prasad aged 27 (Male, unmarried, India) had diagnosed for TM on last year (May-07). Initially i had headache followed by fever. It took a week time to loose my control over legs, bladder & completely collapsed on 8th day. I was unable to stand on my leg, urine & stool got blocked, not able to sit, lost sensation at below chest with lots of pain & had blurred vision. After diagnosis, I had Acute Transverse Myelitis. I have been on Steroid for couple of days & slowly started to gain sensation & able get some movements in leg. I have on indwelled catheter for 2 months. After that, Dr removed the indwelled catheter & tought me to do CIC (clean intermittent catheter), enema & was on physiotherapy. After 5 months i have joined back to work. Now after more than one year I can able to walk properly, able to do jogging (but cant run fast), have complete sensation. As of now I had good recovery, but still I have following problems.
    1. Urge to pass urine,
    2. Difficult to pass stool,
    3. ED
    Right now i'm not on CIC & able to void urine naturally. Max urine i can hold is 279 ml with residue of 68 ml (from sonography). I have been on Tolterodin Tetrate & Imipramine for bladder control. But if i have been on medicine, I need to do CIC as i cant pass urine naturally. If not, i will have urgency which sometime results in leak. Right now I'm not taking any of medicines.

    I had gone penile doppler which reveals that i don't have ED, but still i can't able to have complete erection. As still i'm single I don't have any problem, but need to overcome this too. Do we have any exercise or medicines to overcome this?

    Need your valuable suggestions
    In advance, Thank You for your valuable time & suggestion
    Prasad.
    Prasad,

    Sorry to hear that you had TM. Regarding erectile function, you may want to go the R & S forum and learn about some of the techniques that are used to promote and maintain erections, as well as ejaculation. You should also know that there are clinics that will collect sperm and artifical insemination is a possibility. Many people who have spinal cord injury have used these methods and they should be available in India.

    Wise.

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